Contributors' Brief Histories

Hi Tilly - what a pain in every sense of the word! I know 2 people who have definitely had PMR twice - I don't know if it is any comfort to tell you their second bouts have borne no resemblance to their first time.

Pred changes the way you metabolise carb and that may contribute to the weight gain and development of diabetes in some people. I have lost a lot of the weight I put on with one form of pred - part is being on a different form of pred altogether but some is also due to cutting carbs a lot to about 60g/day. That is a healthy amount and allows a lot of salad and leafy veg - not so much potato, pasta and rice though. I find a blog called "Diabetic Mediterranean Diet" by a doctor, Steve Parker, provides a lot of info. I don't refuse to eat carb - I can't eat any commercialised wheat in things so use gluten-free and rye, spelt and kamut but even so still in small amounts. But the overall effect of the diet is to stop the desperate hunger pangs - and I also started off originally with the 5:2 diet pattern for a couple of months to get me going but I wasn't extreme about the 2 fast days. I now never eat breakfast (never did rate it!) and it doesn't make me hungry before lunchtime - and in our household that is not until well after 1pm! Everyone is different - but it has helped me cut the calories quite a lot.

Sorry you're back - but welcome to the fun! There is another forum where we do have a lot of laughs, sharing photos, stories, more like a real-life support group - it's at forumup and there is a link here:

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

Hi Eileen and Lodger,

Thank you both for your replies and advice.

I have just registered for the NE website so will have a good look around that when I have some time. I got the impression from my doctor that PMR the second time around was quite common and some even get on the roundabout a third time!

I hope I am not depressing anyone! LOL.

I am getting myself organised to start a combination of the 5:2 Diet and low carb in the hope that I won't put on the weight I put on last time with the Prednisolone as I threw away my 'fat wardrobe'. Just finishing off the carby stuff in the fridge and will start on Monday.

It is too early to say if this experience will mirror my last one with PMR as this time it was diagnosed within weeks and not months so I start from a better place.

Tilly

Don't know where your doc got the idea it is common - but if he has evidence maybe he'd like to tell the big boys! Cos they keep saying it is unusual. I don't think it is - I think most of them get such a poor reception first time round they just put up with it if it doesn't confine them to bed. I had it for 5 years when it wasn't TOO awful and I could cope - ruined my 50s for me but hey ho! Then a 10 ton truck arrived.

I'll send you my fat wardrobe! Luckily I have a hoarding instinct and kept a selection of "relatively far less fat" or I'd be naked at present. My tailoress neighbour sorted my highly expensive jeans last week so i can wear them again - 18 months old, 130 euros. 35 euros to give me another 18 months with a bit of luck :-)

Oh no! Please don't send me your 'fat clothes' as I would just grow into them. LOL.

I had thought that getting PMR twice was relatively common, especially if steroids are not taken for long enough.

Interestingly, my next door neighbour has had it twice and HE is a younger very fit PE teacher. Perhaps it is catching or something in the water around these parts?

Tilly

PS

I just looked up PMR on Medscape which cites up to 25% of patients relapse.

http://emedicine.medscape.com/article/330815-overview#aw2aab6b2b5aa

I think that is quite a high incidence and one which, perhaps, needs more research.

Reading about PMR, there seem to be lots of comments expressing a lack of knowledge about various aspects of the disease.

OK then - I won't ;-) I'll keep them in case I need them. God forbid...

Now this is interesting - whereabouts are you? Just order of magnitude will do.

Maybe it is because you have a GP who doesn't tell people it is all in their minds/too young/blah blah and does something about his patients being ill. They are more willing to go back. Alternatively - it may be because they are rushed off pred: it is more common in patients who are off pred in well under 2 years.

I see my last post is waiting to be 'moderated' as I put a link with it. The link was to Medscape and said this:

'The average length of disease is 3 years. However, exacerbations may occur if corticosteroids are tapered too rapidly, and relapse is common, affecting up to 25% of all treated patients.'

I thought 25% was quite high for a relapse statistic but what do I know?

I live in Surrey. My GP is young and female, seems really switched on and sympathetic. I am lucky.

Last time, I was very careful to string out the steroids - in a small dose - to over two years as I was aware of the possibility of recurrence if weaned off Prednisolone too soon.

The reduction in pain and rise in wellbeing after one week on 20mg steroids is dramatic. Last week, I couldn't raise my arms to blow dry my hair. This evening, it wasn't a problem.

I do recall that in 2010, there were some people posting that they couldn't get a proper diagnosis and were unable to get a prescription for steroids. I do hope that this isn't the case anymore and that doctors are enlightened enough to give an experimental dose for seven days as this is a better indication than waiting for blood tests. I hate to think of anyone suffering the pain of PMR and having to fight for help.

Tilly

Yes - I assumed it was a link. I have used Medscape amongst many other references and it is good but I think it is a bit out on a few facts. My experience is that it could well be more than 25% - it will only be the figures from studies, not from real patients.

No - doctors are still NOT enlightened enough to do a test pred week despite Bristol using it routinely at their clinic and having written a paper for GPs to help them diagnose and manage PMR without using the hospital except for atypical patients.

There is a support group which meets every 2 months in Chertsey - despite living in Italy I am aiming to be there for the June meeting. MrsO who posts on here runs it and I'm told it is great fun!

Several of us have worked out reduction schemes that seem to avoid both flares and steroid withdrawal pain - because actually it is next to impossible to distinguish them. Some people (like me) are very sensitive to dropping the dose and I had never got below 9mg/day however I tried. Using a "dead slow and nearly stop" regimen I am down to 5mg. Another version is being used by a consultant in the north of England and it has worked for all patients he's used it for so far. This is mine:

My reductions are VERY slow. I use the following pattern to reduce each 1mg:

1 day new dose, 6 days old dose

1 day new dose, 5 days old dose

1 day new dose, 4 days old dose

1 day new dose, 3 days old dose

1 day new dose, 2 days old dose

1 day new dose, 1 day old dose

1 day old dose, 2 days new dose

1 day old dose, 3 days new dose

1 day old dose, 4 days new dose

1 day old dose, 5 days new dose

1 day old dose, 6 days new dose

By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose" - if you feel OK you can start on the next reduction, no real need to spend a month at the new dose.

This avoids steroid withdrawal pain - which is so similar to PMR pain that you often can't tell which is which and some of us suspect that many flares are NOT the PMR returning but problems with steroid withdrawal. Using a scheme like this also means you can stop immediately if you have any problems - you might be fine at one day old dose, 2 days new (lower) dose but not at a 3 day gap - but you have dropped your dose a lot and that is the idea. It also isn't as slow as you would think - you can reduce at a rate of about 1mg/month on a continual basis.

Hi Eileen,

Thank you for the very helpful reduction scheme for withdrawing from Prednisolone. I have printed it out and stuck it on the inside of a kitchen cupboard. I have only just reduced to 15mg and will stay on that for at least a month before I reduce any further.

Is there any evidence that staying on 5mg for years prevents a recurrence?

I have put myself on a low carb diet to see if that helps. It is supposed to help with lowering inflammation and weight loss. If nothing else, it does make me feel as though I am doing something apart from just taking the tablets! LOL.

Tilly

"Is there any evidence that staying on 5mg for years prevents a recurrence?"

No - because the pred isn't doing anything about the underlying autoimmune disorder that is almost certainly the cause of the symptoms. PMR isn't the disease - it is the symptoms of the disease. The autoimmune disorder makes the immune system unable to recognise your body as "self" so certain cells start to attack your body in the same way they would invading viruses or bacteria. The illness you are diagnosed with depends on which part of the body is being damaged. What possibly happens in PMR is that certain arteries become inflamed and that disturbs the blood flow to the muscles - which are then unable to cope with being used so that even at normal levels of use they act as if they have just run a marathon and ache and are stiff. As long as the underlying autoimmune problem is there so is the PMR and you will need pred to reduce the inflammation and swelling that causes the pain. Luckily it often goes into remission - becomes inactive - and allows you to reduce the pred dose.

To complicate the story though, it is suspected that in some people the adrenal glands or the feedback system that controls them is not functioning properly. That may help trigger the PMR in the first place or make it more difficult to get off pred - and these patients might need a low dose of pred for a very long time, even for life. But they are the exception rather than the rule. Most people are desperate to get off pred and rush at it like the proverbial bull in the china shop. For most people, slow and steady reductions will allow them to get off pred after anything from 2 to 6 years.

Yes - feeling there is something you can control is very comforting isn't it. Low carb should help you not put on too much weight with the pred though!

Hello Tilly

I have put myself on a low carb diet to see if that helps. It is supposed to help with lowering inflammation and weight loss. If nothing else, it does make me feel as though I am doing something apart from just taking the tablets!

That is exactly the attitude that I adopted after commencing high dose steroids. I researched anti inflammatory foods and included as many of them in my diet as I could: oily fish (sardines (with bones - good for our bones which can be at risk from steroids), mackerel, salmon, trout, plus beetroot, avocado, garlic, turmeric. I also included known diuretic foods such as asparagus, garlic, fennel and melon to try and offset steroid-induced fluid retention. I reduced all refined carbs such as white bread, white potatoes (I substituted with sweet potatoes) and parsnips. These foods turn to sugar in our bodies and too much can lead to steroid-induced diabetes in at risk individuals. I avoided all processed meats and as much sugar as possible. I also reduced my coffee intake to special occasions - that together with sugar are known to stress the adrenal glands which are already being suppressed by the steroids.

None of this, of course, provided a cure but I became aware that if, for instance, I missed out on my oily fish for a week (3 helpings a week usually) I would notice increasing inflammation.

I see that you live in Surrey and Eileen has mentioned the support group I run. Do send me a 'Message' if you feel you would like to come along and share experiences with others 'in the same boat'.

As to whether "there is any evidence that staying on 5mgs for years prevents a recurrence", I doubt it, although some people do stay on this dose for life. The secret for me was staying on 5mgs for 5-6 months following a severe flare at that dose that incurred an increase back to 10 for a while. The 5mg dose had obviously been the lowest dose to contain my inflammation at that time so the previous advice to reduce by 1mg a month proved most unsuccessful for me at that stage. After the 5-6 months back at 5mg, I was again advised to reduce by 1mg but I thought "no way Jose" - if it hadn't worked previously why would it work now. So I reduced in a similar way to Eileen's regime above, tapering slowly over 7 weeks in just half mg decrements. Painfully slow, but it worked and I came off steroids just under two years ago.

Good luck with the diet!

Just noticed - all these posts are really on the wrong thread. This thread is specifically for Contributors' Brief History - or as the moderator posted: "A thread for users to put a precis of their story." Sorry moderator!

Oops!

I have moved the last couple of posts to the Pred thread and hope this is right.

Tilly

Hi Tills/Eileen/MrsO,

The thread mentioned is https://patient.info/forums/discuss/predisione-144577 and Tills - to use the private message facility just click on the message button under the relevant user's name.

Re these posts - if the other thread is not the correct place for this discussion or the posts already copied over let me know. I can arrange for all of the posts appearing here to be split out into a separate thread and removed from here or added to the other thread but not sure if that will jumble that one up. Just reply here to let me know where you want things and I'll sort and tidy up later. Also if it is easier just carry on the discussion here until we agree .

Regards,

Alan

Dear Alan,

Whichever you think is the least confusing. My apologies if I caused the confusion. Classic case of thinking through fog! LOL.

Tilly